It’s because he’s just the principal you want your local school to have if you have a child who is autistic, or even just ‘different’, or a free spirit, or if your family does not fit the ‘norm’. Bill became principal about the same time as the 1989 Education Act which brought in community governed self-managing ‘Tomorrow’s Schools’, and also had the landmark Section 8 which meant that every child had a legal right to attend their local school. This has been problematic for many schools, but not Thorndon. School camp - no worries. All the kids went and anxious parents were welcomed to go, but some (like me) subtly encouraged to stay at home. Swimming lessons and swimming sports – all had a go, and in our last year I remember watching as a teacher carefully carried a small autistic child into the pool and walked through the water with him to complete the race.

We were lucky that Bill was principal of Thorndon School even before my own little ’special needs’  boy started school. He was already attending the speech therapy clinic next door and it was recommended that he move onto Thorndon School with its unique ‘language unit’ which had evolved at the school. Children from all over the Wellington region with significant speech/language issues enrolled at Thorndon as ordinary students. They each had a half hour daily withdrawal for one to one speech therapy, although sometimes it involved working with small groups of ‘regular’ children to model appropriate behaviour. There was also a speech language therapist who worked across the classrooms to reinforce teaching and learning. Of course this model did not survive the National Government’s 1996 policy of Special Education 2000, but by then my son’s language and associated skills such as turntaking had vastly improved with this targeted and skilled intervention. For Years 1-8 he couldn’t have had a better educational environment.

I had a child who was different (the autism diagnosis didn’t come till many years later) and he didn’t have much language or interaction when he started school. He walked on his tiptoes, spoke occasional phrases referring to himself in the third person and was often echolalic. But the school had multi-level classes and for his first three years he had the same teacher – the wonderful Margaret Rogers.

Many years later I heard about ABA and realised that Margaret was a natural at it, gently but firmly reinforcing the desired behaviour and discouraging the unwanted. I also remember her sensible advice about encouraging reading, at a parent teacher evening. She told the parents that school can teach the basics but it is up to them to show their child a love for the written word and reading and model it whether by reading the newspaper every day, a weekly trip to the library and bedtime reading. She resisted sending reading books home which then became a tedious homework chore, although school library books chosen by the children were encouraged.

Thorndon School under Bill’s leadership was genuinely child-centred and the children all equal regardless of their background or abilities. When my child was stressed it was OK for him to run out of the classroom to watch the school caretaker sweep the leaves, while another child in his class preferred to do her learning standing on her head. My child was a runner and there were three school entrances onto busy inner city streets but there was never a mention of requiring a fence - somehow they all seemed to look out for each other, and what was happening in the classroom or playground was rather interesting and worth staying for.

 Extensive research shows that that there are three things that make a good school:

• effective leadership
• good community/school relationships
• high expectations of successful achievement for all the students.

In my experience this all happened at Thorndon. So what is it about Bill that is special (although he would probably hate that identification as much as ’special needs’ children do)?

Firstly, he’s an enthusiast for education. He was always on the lookout for new ideas and was prepared to try them. Before Bill’s time the school was one of the first in Wellington to have on-site after-school and holiday programmes and a Maori immersion class. In his time it was one of the first to embrace on line learning and become a networked school. There was flexibility so that opportunities could be taken up. So when Nelson Mandela visited parliament, the Thorndon children walked down the road to chat to him. Bill got cheap tickets to take the children to the International Festival of the Arts (my son went to many events) and even the young children went to the opera. They all regularly walked to the city library, participated in the fringe festival and other local events.

He had a knack of employing enthusiastic teachers and particularly good teacher aides. They also seemed to like the school and stayed.

Bill always seemed calm – whether a child broke their leg in the playground, had a meltdown, or in one case threw a rubbish bin at him after smashing a window. Bill told me once that when he graduated from teachers college the male teachers were all given a leather strap to hit the kids. Of course he never used it (although corporal punishment only became illegal in the late 1980s).

He was also not beholden to compliance requirements from the Ministry of Education (which was just across the road) or when ERO came. His attitude seemed to be to do minimal compliance and get on with the real work of teaching and learning. This  infuriated some officials and board members, but good relationships were soon restored. What he did show was that inclusive education was possible, practical and of benefit to all participants, and all those who experienced this first hand at Thorndon have hopefully taken it into their own future.

So thank you Bill, for helping give my son such a good eight-year educational start. I hope that other autistic children find such inclusive schools with other Bill Suttons in charge. I imagine your retirement will be as creative and child centred as your educational career.

Soon after that I was in the local supermarket when I saw the Member of Parliament, Allan Peachey who was the new chair of the Education and Science Select Committee – the committee that should have been given the job of examining the bill and hearing public submissions.  As happens in New Zealand, where politicians are seen as ordinary citizens, I introduced myself and expressed my concern about the impact of national standards on autistic students. He suggested that Autism NZ (I was then on the board) contact the select committee. Which I did, and the concerns were covered in an early post on this humans blog.  We visited them twice before my term on the board finished. Both the Ministry of Education and current Autism NZ CEO and staff have subsequently briefed the committee on progress.

However, in three years, nothing much has been resolved, and it seems schools are more or less deciding for themselves whether their autistic students are required to participate in National Standards. The National Standards regime itself remains very unpopular, divisive and largely resisted by schools. It is a pity the initial bill did not go through the select committee process as many of  the difficulties in implementation would have become obvious then (and maybe resolved). Meanwhile the US has largely abandoned the No Child Left Behind Policy on which our standards regime was largely based.

As the current session of parliament comes to an end, the Education and Science Committee of  the New Zealand House of Representatives has issued a report on the briefings it has had over the last three years from Autism NZ over the vexed question of the National Government’s new national standards regime and its impact on and appropriateness for students with autism. That such a report has been published is a victory for citizenship democracy. But this won’t be the last time we need to stand up for people with autism in the formal political processes.

Here is the link to the full report and below is the text.

http://www.parliament.nz/en-NZ/PB/SC/Documents/Reports/5/8/b/49DBSCH_SCR5332_1-Briefing-from-Autism-New-Zealand-Briefing-from-the.htm

BRIEFING FROM AUTISM NEW ZEALAND

 Recommendation

The Education and Science Select Committee received briefings from Autism New Zealand, from the Ministry of Education on the educational needs of students with autism spectrum disorders, and from the Ministry of Education on the arrangements for assessing students with autism against the National Standards. We recommend that the House take note of our report.

Introduction

We received a letter from Autism New Zealand Incorporated, dated 29 January 2009, which expressed concern that they had not been able to make a submission on the Education (National Standards) Amendment Act 2008 as it had been passed under urgency. The letter also set out their view of the implications of this legislation for students with autism spectrum conditions and their families. We initiated a briefing from Autism New Zealand on these issues (and invited the Ministry of Education to attend); subsequently, we initiated briefings from the Ministry of Education on the educational needs of students with autism spectrum disorders, and on the arrangements for assessing students with autism against the National Standards.

Hearings of Evidence

29 April 2009

We heard from Autism New Zealand that their main concerns about the Education (National Standards) Amendment Act 2008 were that it provided for higher fines for parents who do not ensure their children attend school and that it introduced formal testing against literacy and numeracy standards for all primary-age pupils. When a student with an autism spectrum disorder does not attend school it is much more likely to be because of a negative school environment than a lack of effort on the parents’ part.

Students with ASD are likely to have different learning styles, and educational strengths that do not line up with formal definitions of literacy and numeracy. They noted the negative effect on the teaching and learning of ASD students of the No Child Left Behind policy in the United States.

Autism New Zealand also noted the publication by the Ministry of Health (co-authored by the Ministry of Education) in March 2008 of the Guideline for practitioners; recommends complementary, coordinated responses; raises awareness; and seeks to improve practice, knowledge, skills and confidence in services. They would like the Government to follow the guidelines when designing and implementing policy. Autism New Zealand had not been invited to contribute to consultation on the implementation of the National Standards; the Ministry of Education noted that the consultation had not yet started.

3 June 2009

We heard from the ministry about resources it has developed for the education of students with ASD. It noted that a majority of students with ASD could be classed as high-functioning and did very well in the school system; and many of the remainder qualified for support from the ongoing and reviewable resourcing schemes. The ministry’s response to the recommendations in the New Zealand Autism Spectrum Disorder Guideline  dealing with education has been to compile an Autism Spectrum Disorder Action Plan, which focuses on early recognition and intervention, and building a national network of expertise in dealing with ASD.

The ministry has been considering support for ASD students’ transitions between classes or schools, and is developing policy based on individual education plans. Awareness of ASD in the community has improved since the ministry released a DVD called In My Shoes.

We noted that the ministry’s consultation on the National Standards had now begun, and expressed a wish that the ministry not conclude the consultation without reference to the issues raised by Autism New Zealand and the views expressed in the “Education for learners with ASD” section of the New Zealand Autism Spectrum Disorder Guideline.

4 August 2010

We heard from the ministry that about one percent of the population is likely to fall somewhere on the autism spectrum. It has established a training programme for teachers, called “Tips for Autism”, and has introduced a post-graduate diploma in special education. There is an expectation that the national curriculum will be delivered to every child in the education system; the National Standards are used to measure achievement under the curriculum and to report the level of achievement against it.

For students on an individual education plan, progress towards the individual goals set out in the IEP will be reported, and the IEP is expected to include any part of the National Standards that are achievable by each student. The ministry believes that the way the National Standards are assessed should be tailored to the needs of every child, not only special needs children with IEPs.

10 November 2010

We heard from the ministry that the Government’s response to the review of special education had been released, and included further resources to support students with ASD, particularly those receiving ongoing and reviewable resourcing scheme funding. Further work will be done on itinerant teachers operating out of special schools to support the ORRS programme. The graduating teacher standards now include specific requirements concerning special education. The ministry confirmed the policy mentioned in the previous hearing on reporting to parents for students on IEPs, and the ministry’s new guidelines for IEPs was ready to be released to schools. The ministry noted that students receiving ORRS funding, students whose schools have placed them on IEPs, and students with ASD are separate, although overlapping, categories. Students whose progress will not be reported to parents against the National Standards are likely to be only those who are both on an IEP and receive ORRS funding because of high cognitive needs. Reporting against the National Standards to boards on all students will still be required.

23 March 2011

We heard that Autism New Zealand remains concerned about the level of awareness in schools of ASD and its interaction with the application of the National Standards. They are also concerned that many ASD students are not on IEPs, and that most ASD students do not attract ORRS funding, with the consequence that many who in their view are unlikely to ever reach the National Standards will be measured against them, and will have nothing but failure to be reported. A third area of concern is the model answers supplied for assessing student work against the National Standards. A related issue is students with a wide divergence of ability in different parts of the curriculum; students may, for example, excel in reading comprehension but be unable to reach the standard for writing. Autism New Zealand is also concerned that many ASD students, particularly at primary level, have difficulty enrolling at a school; we heard about one student who had been turned away by five schools. They did not believe that schools’ concerns about their National Standards performance was exacerbating this problem.

7 September 2011

We heard from Autism New Zealand that they have had further meetings with the ministry and have been developing resources and tools for use in schools, as has the ministry. An area of concern is that a significant number of teachers still do not have the skills necessary to work with special needs children, particularly ASD children, in the context of the National Standards. Most of their concerns previously expressed to the committee remain.

We heard from the ministry that the implementation of the National Standards is a three-year programme with at least another year to run. The response to the review of special education has prompted further professional development, some for all teachers about the National Standards, and some about special education as needed. The ministry did not believe that the requirement for schools to have targets for the National Standards in their charters would discourage schools from enrolling children with special needs. The ministry considered that the information gathered from reporting against the National Standards would help bring potential problems to their notice, which the ministry would then act on.

Conclusion

We would like the incoming Education and Science Committee to note the progress that has been made on these issues, and to continue to monitor the way the National Standards are applied to students with autism spectrum disorders, particularly in the light of the recommendations from the review of special education.

Appendix

Committee procedure

We received briefings from Autism New Zealand on 29 April 2009, and 23 March and 7 September 2011, and briefings from the Ministry of Education on 3 June 2009, 4 August and 10 November 2010, and 7 September 2011. We considered the briefings on 28 September and 5 October 2011.

Committee members

Allan Peachey (Chairperson)

Kelvin Davis

Catherine Delahunty

Jo Goodhew

Colin King

Sue Moroney

Hon Heather Roy

David Shearer

Louise Upston

Paula Jessop, a Kiwi aspie and friend of mine, was preparing a presentation on ‘Adults with ASD’ recently, and asked us aspies on Facebook, what were ‘The Top Five Things We Want People to Know About Adults on the Spectrum’. The resulting discussion set me off thinking, and I’ve formulated my own list – with contributions from Gabrielle Hogg, Karleigh-Jayne Jones, Rebecca Lumsden, and Leith McMurray.

Anyway, here’s my five things :-

1) That we are human beings first and foremost. We have wishes and dreams, hopes and ambitions, experience love and anger and happiness, the same as NTs do. We may experience them differently, or have different dreams, but the similarities are often stronger than the differences. Sometimes it’s too easy to perceive our behaviour solely through the distorting lens of ‘they’ve got this Condition’. As Rebecca puts it – “Not ALL our behaviour is autistic, sometimes I’m just having a bad freaking day.”

2) If you’ve met one person with autism, you’ve met one person with autism. “Every person with autism is an individual, our autism is expressed differently for each of us.” (Rebecca) Autistics are not all maths geniuses (I’m certainly not!), computer nerds, train-spotters, and/or lovers of fantasy/science-fiction. Nor are we all (or even mainly!) recluses and obvious ‘oddballs’, social rejects with no sense of humour and a lack of personal hygiene. Many hold down jobs, or are married and/or raising children. Some of us have become very good at concealing our autism to ‘fit in’ (it’s still there underneath of course). And some of us are female. As Gabrielle points out, “ASD looks different in women.” A stereotype is just that – a stereotype.

3) Autism is a Developmental Disorder. Our development is delayed, meaning that we often can’t do things at the ‘normal’ age, but this doesn’t mean we will never be able to do it. It might just take us a whole lot longer. “Adults with ASD still may need help in independent living skills… [and some] may need help with communication issues… having a communication device may help them to become more independent!” (Gabrielle) Nonetheless, we are capable of much more than people think. “Don’t underestimate us cause with the right support, we can do awesome things.” (Karleigh-Jayne)

4) Many of us have other, ‘co-morbid’ conditions as well. (Gabrielle) This of course complicates the individual picture! These ‘co-morbids’ can include any or several of the following:- Dyslexia, dyscalculia, dysgraphia, dyspraxia, hyperlexia; ADD/ADHD, sensory processing disorder, auditory processing disorder, prosopagnosia, executive dysfunction, communication difficulties; bipolar syndrome, depression, anxiety disorders, social avoidance disorders, alexithymia. All these also occur without autism, but there is a high correlation. Most we are born with, but some are acquired through living in a world we find confusing, overwhelming, discouraging and unaccepting, eg depression. But never assume that a difficulty you have with an autistic person is due solely to the autism – it may be because of the ‘co-morbid/s’. Sensory issues especially “can make life hell!” (Gabrielle) Autism can also occur with unrelated conditions – I have heard of autistics who are blind, deaf, Downs Syndrome or physically disabled.

5) Autism means a different ‘mindset’. We act differently because we think, react, and feel differently to NTs. This different mindset is ‘hardwired’ into us, and can mean – i) A focus on things rather than people, especially our ‘special interests’. ii) An often extreme perfectionism, and rigidity of routines – “Please don’t make plans and change or complicate them at the last minute! Make sure that your aspie friend knows exactly what to expect at an event/appointment etc.” (Leith). iii) A lack of any instinctive ability to ‘read’ other people, which can make us appear ‘rude’ or ‘arrogant’. “Bluntness in speech may cause offence, this is not malicious… It is quite ok to point this out to an aspie (politely) and suggest it be re-phrased or recognised and apologised for… Emotion neutral is the way to raise problems with an aspie.” (Leith) iv) Social difficulties and sensory overload means we can get overwhelmed easily, which leads to shutdowns or meltdowns. This is often beyond our control, so, as Leith points out, “Quiet and patience are the only tools to use, and it may take a couple of days for us to fully recover!”

And above all, remember – “We may not appear stressed, but interacting with NTs is way more stressful than they might imagine.” (Leith) A spoonful of simple kindness goes a long way.

Thanks to Penni and all the others who contributed for allowing this to be reprinted here on humans.

Why is he visiting and why should New Zealanders to be vigilant about his message? The answer is that the New Zealand government is about to drive through similar welfare ‘reforms’, otherwise known as cuts, following the work of its Welfare Working Group which was appointed in 2010. The WWG reported on 22 February 2011, an hour before the destructive Christchurch earthquake. The signs weren’t good.

Many of us have been watching with horror as the welfare ‘reforms’ have been rolled out in Britain. The  justification is that there is something evil called ‘welfare dependency’ that many poor and disabled people and single parents suffer from, and which can only be cured by paid work, preferably fulltime.

Mr Duncan Smith expressed his underlying assumption for this policy – that welfare dependency leads to ‘worklessness’ (not the other way around). But I suggest there are two basic things missing in this equation: the role of the government to create jobs; and the role of the state in ensuring the dignity of all its citizens. He did not apologise for, or even acknowledge, the role of neoliberal policies under Conservative leader Margaret Thatcher which destroyed industries and millions of jobs. Yet he claimed that one million people will be lifted out of poverty by these reforms.

These assumptions are underpinned by an absolute belief in the moral good of paid work and the lack of value of any other kind of work including voluntary work or child rearing. The Tory minister said that it is very important for the child of a single mother to see his/her mother go off to paid work every day as that would normalise ‘work’ for the child. The only unresolved question, he suggested, is what age that should happen. In New Zealand proposals the child could be as young as 14 months. In Britain it is five years old.

When a member of the audience asked about creating work he replied with a sigh that he thought we had moved beyond that question. He said it is the private sector’s job to make jobs and the state’s only role is to make things easy for the private sector to do that. He claimed that the private sector had created half a million jobs in the last year but – wait for it – British people didn’t want them so they had gone to ‘immigrants’. So if the hundreds of thousands of unemployed British people are ungrateful and lazy, what does that say about disabled people?

For disabled people in Britain currently on welfare the first step out of ‘dependency’ is an assessment for ‘workfitness’ (a term that harks back to eugenics). To assess the ‘workfitness’ of disabled people, a private multinational company, Atos,  has been contracted to do a tick box computerised assessment without any contextual information such as mental health or disability history.  Depending on what an individual scores they can be placed in three categories: work fit and ineligible for even basic employment support, work fit with employment support, and not work fit (ie unfit).  It is easy to imagine how aspects of a condition such as autism are overlooked by medical questionnaires which ask questions such as can you walk, or dress yourself. There are incentives such as rewards of additional contracts for the company to push people off the welfare system, and its profits are currently at record levels.  But it seems there have been so many challenges to the insensitive and inaccurate assessments that the system can’t cope.

As well as workfit tests, there are also cuts to other aspects of the welfare system such as allowances for housing, programmes, and disability support including such things as continence supplies. There have been reported suicides, and regular reports of disabled people suffering because, for example, they can’t afford adequate housing and families unable to get supplies for their disabled children.

Mr Duncan Smith has also distorted the concept of social justice, with its implications of equity, inclusion and bottom up social policy, by using it for the name for his own right wing think tank, the Centre for Social Justice, whose purpose appears to be championing policies to inflict social injustice on the poor and powerless.

It is rare for us here to have the chance to get up so close with someone so powerful, so I listened carefully. After all, there is the equivalent of the population of NZ on welfare in Britain, out of a population of 62 million. He is a very smooth and persuasive talker, obviously clever, and had the look of someone who has been well nurtured with a comfortable life; I suppose you don’t get to be head of the Conservative Party without these attributes. So how can he justify the misery and pain his policies are so clearly causing? He is not evil and is clearly genuine concerned. One of my interests is ethical public policy*; I think that the only way powerful people can inflict such policies on other people is by seeing them as ‘other’ not fully human, or objects of scorn or laziness. Interestingly, in Britain the opponents of these policies have adopted the black triangle  – the Nazi symbol used to classify the  ’workshy’, one of their ‘othering’ labels – as their campaign symbol.

So at question time I asked Mr Duncan Smith whether it worried him that his policies might be hurting real people. He initially didn’t agree, blaming misinformation campaigns and claiming disability groups had asked for these changes, but it clearly needled him. I think this is the way to challenge those whose policies risk hurting and harming other people – as human to human. And we need to keep doing it otherwise inequality and suffering will only increase.

Alternatively,  we can always hope that politicians will actually ask real people for input into policy, and listen to the wisdom that comes from their  lived experience. But not much sign of that happening.

Then it was out into the cold again.

“The medical was an absolute joke’ http://www.guardian.co.uk/politics/2011/feb/23/government-reform-disability-benefits

Report of the Welfare Working Group http://ips.ac.nz/WelfareWorkingGroup/Index.html

Welfare Justice: the Alternative Welfare Working Group http://welfarejustice.org.nz/

The website of the British black triangle disability rights campaign http://blacktrianglecampaign.org/sample-page-2/

Disabled People Against Cuts www.dpac.uk.net

*See Stace and Sullivan (2011) ‘Can policy be ethical without consumer input?’ in Ethics and public policy: contemporary issues eds J Boston, A Bradstock and D Eng, Wellington.

However, the process dragged on. Significant social media interest ensured that Arie was not forgotten, and a more experienced defence lawyer took on the case pro bono as the police continued to refuse diversion (which would have ended the case) at a series of hearings. At the beginning of July he was once again remanded. On 10 July the TV1 Sunday current affairs programme ran an item called ‘A tale of two light bulbs’, in which Arie and his friend Michael were allowed to tell their own story. (As a parent of another 25 year old man with autism I just loved its authentic portrayal of the condition, such as Arie’s temporary distraction by a train while they were filming, and his intense honesty.) The programme also revealed that the building owners (an elderly couple) were not aware of the ‘burglary’ until Sunday contacted them a couple of weeks earlier; they confirmed it was a building derelict even before the first September earthquake, the fittings had little value, and their main concern for anyone entering the site was safety. In the programme Arie was shown visiting and apologising to them.

The obvious solution is for a kind electrician to give Arie a job or apprenticeship opportunity to utilise his extensive interest and knowledge of electrical systems. This is just the sort of initiative that is needed to rebuild the city of Christchurch.

Arie’s ‘case’ has raised interest and understanding about autism and aspergers, and has seen, possibly for the first time, a young autistic man talk about his own life on prime time television without any of that hero/tragedy overlay stuff that is the usual default position of ‘disability’ stories. The ‘case’ came into the public consciousness and stayed there for four months largely because of the power of social media. The intense public and media interest have seen extensive discussion: on dedicated facebook pages such as the one for ‘Justice for Arie Smith-Voorkamp’ (on which Arie and Michael have both commented); advocacy websites including those for Aspergers, and gay rights; as well as the mainstream blogosphere such as Russell Brown’s Public Address;  and commentators Brian Edwards and Chris Trotter. Many websites contain comments from other people with autism and family members on their own, often similar, experiences.

Even though there have been the inevitable negative feedback and responses, and the police and the justice system seem currently stuck in finding resolution, my belief is that Arie’s ‘case’ is one of those seminal and symbolic events which significantly shifts our way of seeing and thinking about difference and inclusion. In the past the only direction for someone like Arie would be incarceration in an institution, or forensic unit, likely with chemical straitjacket as ‘treatment’ for mental illness. However, in 2011 he is a resilient individual with a face and a voice, and expectations of an ordinary life. Without wanting to sound too sanctimonious, it’s an opportunity for the rest of us to reflect on our own individual and collective attitudes to autism, ‘disability’ and humanity.

Here are some links

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10709601

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10711260

http://publicaddress.net/system/topic/2931/ about Arie (First thread from 7 March which had 41,000 views)

http://publicaddress.net/hardnews/angry-and-thrilled-about-arie/   (Second thread from 11 July)

http://strangeringodzone.blogspot.com/2011/07/two-lightbulbs-aspie-and-police.html

http://www.asnz.exofire.net/index.php?news&nid=21

http://bowalleyroad.blogspot.com/2011/03/whose-media.html

http://gaynz.com/blog/bipolarbear/archives/104

Here is the Sunday programme from 10 July

http://tvnz.co.nz/sunday/s2011-e19-video-4292608 Sunday programme

For those from outside NZ who may not be able to access this here are some notes posted on facebook

NOTES FROM TV ONE’S SUNDAY PROGRAMME ABOUT ARIE SMITH (7:30pm 10 July 2011)
Arie, 25 years of age, partner Michael (both appeared on the Documentary segment)

“Arie Smith is a name under close Police scrutiny” (Commentator)
“I’m too scared to go outside now” (Arie – referring to the beating’s effect)
“2 light bulbs from a building condemned” (Commentator)
“feast on Christchurch’s Carnage” (Laws – the building was wrecked prior to all earthquakes)
“I ain’t no wild animal” (Arie – referring to Laws calling him “feral”)
“Arie was charged and paraded by Police” (Commentator – referring to how he was paraded before soldiers for abuse)
“kept on suicide watch” (Commentator – referring to Arie’s remand for a week)
“didn’t wear a bike helmet” (Commentator – extracting information about Arie’s only previous offence)
“I love trains” (Arie – atopping his thoughts while seeing a train pass before him as he was being interviewed)
“an old PDL box-type light switch” (Commentator – referring to the third item that took Arie’s interest that he was dismantling at the time after getting two light bulbs)
“passed (the site) over and over again”, “it drives me bonkers” (Arie – referring to how he became obsessed about the fixtures”
“draws complicated electrical diagrams” (Commentator – noting Arie’s obvious intelligence)
“I’m pretty smart” (Arie – assessing his own intelligence)
“foster homes, neglect, abandonment” (Commentator – noting Arie’s harsh past)
“I was diagnosed at 13” (Arie)
“targetted by bullies and left school at 15” (Commentator)
“did community courses” (Commentator)
“self-taught on electrical” (Commentator)
“fixes light switches from old building sites” (Commentator)
“ignored modern switches” (Commentator)
“saw light bulbs” (and thought) “these will look good on show, on the mantelpiece” (Arie – explaining what he was doing in taking the abandoned items)
“I lit up like a bulb” when I saw them (Arie – referring to what he was thinking at the time)
“they can deny it, but I saw it was” (an assault) (Michael – referring to Arie being beaten)
“common assault, they treated him like a common animal” (Michael – referring to what he thought happened”
“I repeatedly told him not to go in – the building’s unsafe” (Michael – stating why he stayed outside at first)
“went in after 10 minutes to rescue him” (Michael – stating his purpose for being in the building”
“michael did nothing wrong” (Arie – referring to his partner’s role)
“a female cop came in first” (Arie)
“two army guys put handcuff’s on michael” (Arie)
“Arie was hysterical, there were three on him, two holding him down and one” tightening the handcuffs. Arie was saying ‘they are too tight already’” (Michael)
“elbowed him in the face, I heard it, like ‘clunk’” (Michael)
“he was hysterical and cuffed at the time and his face was on the ground” (Michael)
“punch at the back of the head” (Arie)
“Blacked out a couple of times” (Arie)
“Police say any involvement of army is spurious” (Commentator – quoting Police news release)
“common animal”, “physical assault” (Michael)
“if Police had taken a calmer approach, they would have stopped the hysteria” (Michael)
“taking the piss out of him ‘you a bit funny are you?’” (Michael – giving example of Police making matters worse because of Aries stutter etc.)
“coz of the punishment what I got I’m even too scared to go out” (Arie – referring to the life he now leads as a result of the beating)
“I don’t ever want to go to jail. It was terrifying” (Arie – suggesting why he was not up to make a complaint against Police)
“Andrew and Irene Matsis have been the buildings owners for over 40 years” (Commentator – introducing a nice oldish couple who owned the pre-earthquake derelict structure)
“I realise I put Police in jeopardy” (Arie – referring to the harm of his actions in going into the dangerous building”
“nothing of value” (Matsis – referring to the items Arie was interested in, took)
“telling them off” (Matsis – referring to correct punishment due because the building was dangerous to enter)
“would not have pressed charges – of course not” (Matsis – referring to correct punishment due)
“he is welcome to them and you can tell the Police” (Matsis – referring to the two light bulbs)
“serious nature” (Commentator – referring to Police press release of how they considered the charges)
“unblemished record” (Commentator – referring to Arie’s past)
“4 months, 6 remands” (Commentator – referring to ordeal for Arie)
“long backlog of cases” (Lawyer – referring to legal situation in earthquake damaged Christchurch at present)
“a forensic enquiry that will be expensive and a waste of resources” (Lawyer – referring to what path the Police have chosen)
“I want to apologise for taking two light bulbs” (Arie – to the Matsis couple)
“they (Police) should have rung us up” (Matsis – not understanding why this was all being done in their name without any say so)
“a bright future” (Commentator – referring to Arie’s future in electrical work etc.)
“hopes to be an electrician” (Commentator)
“Police have visited the Matsis’ twice” (Commentator – referring to the sinister way Police have leant on the Matsis couple to retract any concern they had for how Arie had been treated)
“Police have told us that Sunday are under criminal investigation as a result of our story” (Commentator – ending with the most sinister part of all, that Police are trying to muzzle/prosecute Sunday for running the story)

2009 started off beautifully for my family. I gave birth to our third baby in as many years that February, a beautiful baby girl we named Isabella, and life continued on at its usual frenetic pace for me as the stay at home Mum of three children so close in age. Bella’s big brother Stephen and big sister Micah adored their “baa sissy” (baby sister), and all seemed right with the world.

One Friday afternoon soon after she was born, I dropped Bella off to my Mum and Dad’s place so I could go pick my husband David up from work, and Stephen and Micah from preschool. There was a note for us beside Stephen’s name on the sign-in sheet to please see the centre director. A little confused, we found her in Stephen’s room, along with the head teacher of that room, wanting to have a chat with us about Stephen’s development. He had developed normally and as expected up until the time he was about 16 months old, then he lost a lot of the language he had previously acquired and became sullen, withdrawn from the world, and found it very uncomfortable making eye contact with people. Being our first child, we had no benchmark, and thought perhaps it was just a phase he was going through, that he would return to his normal bright, engaging self in time. We shared this with the centre director and head teacher, and they in turn gave us a list of their concerns about how Stephen was doing – he would jam himself into impossibly tiny spaces to escape the hustle and bustle of the classroom on a regular basis, his speech was minimal and was more or less repetitive, indecipherable baby babble, he had no social awareness and would aimlessly wander round the classroom, not wanting to play with the other children, preferring to inhabit his own little dreamland. The list went on. I was shattered beyond words, and went into a period of intense grieving. I berated myself at the time for being silly, but have since found out there was a lot of unspoken mourning going on in my family, and that I wasn’t alone in my sadness.

Through this fog, I realised I needed to get Stephen into our GP so referrals could be made to the right people, and we could get some answers as to what was going on with him. The GP immediately agreed something was quite remiss with Stephen and duly sent off three referrals to our local hospital – one to the paediatrics department to assess Stephen’s development as a whole, one to the ophthalmology department to check the cause of a sudden onset squint he had developed a couple of months previous, and one to the ENT/audiology department to see if the cause of Stephen’s delayed speech was perhaps a hearing problem. Letters came back advising us he was on waiting lists for all three services, so we sat back and waited patiently for Stephen’s number to come up, as it were. The audiology and ENT departments were the first to contact us with an appointment, and while Stephen was unwilling to co-operate with audiological testing, the ENT specialist was able to deduce Stephen suffered from quite significant glue ear and he had surgery to insert grommets within a matter of weeks. The wait for appointments with a paediatrician and ophthalmologist continued.

In amongst all this uncertainty, Stephen celebrated his 3^rd birthday, we heard he was to finally be reviewed by the paediatric ophthalmologist, and he had his 3 year Plunket check. The Plunket nurse was straight up with me – “Kate, to me it looks like Stephen has some form of high-functioning autism”. I was by then in a place where I could accept what she was telling me, rather than brush off her concern. She also made a referral to Special Education, for Stephen to receive early intervention, speech language therapy and teacher aiding services.

The day of Stephen’s appointment with the paediatric ophthalmologist came around fast. I got my Mum to come with me; Stephen was quite a handful to take out in public by myself and I appreciated her help. I thought the appointment would be pretty straightforward, maybe Stephen would need a patch to help correct the squint, and that’d be it.

How wrong I was.

The ophthalmologist did a few checks on Stephen, popped some dilating drops in his eyes, and we were called back after half an hour for him to take another look at Stephen. My heart leapt up into my throat and tears stung at my eyes as he told us he was observing substantial bulging and swelling around the optic nerves at the back of Stephen’s eyes, that he was ringing the paediatrics team in the childrens’ ward, and that we were to go there immediately after our appointment with him. I kept moving and talking but inside I was numb. I didn’t have a medical background but I knew those symptoms suggested my precious little boy had a brain tumour.

For the next handful of days Stephen and I spent our days at the hospital while he had a battery of tests, including a CAT scan, a lumbar punch, several blood tests, and eventually a MRI scan. David had to attend a block week for the Diploma in Teaching which he was (is!) studying by distance in the middle of it all, so as he wasn’t able to support me, my parents agreed between themselves that one of them would always be with me for when, not if, the news that Stephen had a brain tumour came. My elderly grandmother who had had three hip replacements wanted to be seen to be doing her bit supporting our family at our time of crisis, so she came over to our place each day and looked after Micah, who wasn’t quite 2 at the time, and Bella, who was 6 months old. It was so humbling and heartwarming to have so much love and support at a time where I felt like I was dying inside all over again.

I prayed around the clock for my wee dude and continued doing so as he was put under anaesthetic for his MRI. He had been put through so many invasive procedures over the preceding few days and lashed out as we held him down to go through another. I tried to be staunch for Dad, he was with me and found the whole procedure very upsetting. We sat outside the room where the MRI was being done in the silent, sad knowledge we’d know for sure that Stephen had a brain tumour soon. The radiographer called me as Stephen was waking up and quietly whispered “we found no sign of any sort of a tumour” to me as he passed by. No tumour? My prayers had been answered! But what was it that was making Stephen present with all the symptoms of a brain tumour then?

We went back to the childrens’ ward and the paediatrician and paediatric registrar who had been looking after Stephen confirmed to us that Stephen didn’t have a brain tumour. Tears came again; this time though, they were tears of happiness. Instead, he had a condition called idiopathic intracranial hypertension (commonly known as IH), which is a neurological disorder not very often found in children, especially those as young as Stephen was. He didn’t need to have a shunt inserted to relieve the pressure (thankfully), and the condition has carefully managed and monitored by Stephen’s paediatrician.

So it was through Stephen’s brush with IH that we got in the back door with the paediatrician. Once we got Stephen on an appropriate course of medication for his IH, I raised the issue of Stephen’s many autistic tendencies, and his paediatrician agreed it was certainly something that warranted being looked at in depth. It was about this time too that we heard from Special Education. An early intervention teacher came over to our place and did a series of assessments on Stephen, all of them showing deficits in areas that positively screamed autism. By now, I knew in my heart Stephen was autistic too and in a strange way it gave me satisfaction to know I wasn’t imagining some of the things that were going on in his life. I looked forward to sitting down with his paediatrician and hopefully getting an official diagnosis for Stephen.

The date for that official assessment came and I will never forget it – 26^th November 2009. I look on that day as the first day of the rest of Stephen’s life. The paediatrician quickly proffered a diagnosis of high-functioning autism, high-functioning meaning that Stephen isn’t as badly affected as others on the autism spectrum. I was delighted, and you might think that strange, but we had that answer we had been seeking and it was the key to Stephen receiving many services he was entitled to.

We were also very fortunate to have a switched-on advocate in the form of Stephen’s early intervention teacher, who sent out referrals to our local NASC so that Stephen might receive some respite care, in addition to letting us know about other services like Riding for the Disabled. We were incredibly grateful as parents of newly-diagnosed children often feel like they’re left to discover a lot on their own accord. At about this time, Stephen was also diagnosed as being vision impaired and was accepted onto the roll of the Southland vision resource centre, who are a satellite campus of BLENNZ (Blind and Low Vision Education Network New Zealand). Stephen’s resource teacher vision (RTV) has been another godsend in helping to make the environment at preschool more user-friendly and accessible for Stephen as a vision-impaired learner, as well as being a vital member of Stephen’s “support crew” who is vitally, and genuinely, interested in Stephen’s health and welfare.

From then on in, I’ve been armed with a passion to learn as much as I can about the conditions affecting Stephen and be as proactive and assertive an advocate as I can for Stephen, which hasn’t come easy or naturally but I’ve made it happen! I linked up with my local branches of Autism New Zealand and Parent to Parent, which has lead me to participate in events like the Southland May Day disabilities expo in 2010 and 2011, the Parent to Parent 2^nd Generation workshop in Auckland in July 2010, the Autism New Zealand national conference in Wellington in September 2010, and more recently, I’ve joined the Special Education Southland parent reference group as the represetative of a service user in an early childhood setting, and have just completed a series of four workshops facilitated in Wellington by SAMS, called Partners – Influencing Change, which helped me to learn more about being an effective advocate and how to go about making meaningful change in the disabilities sector. I’m also the secretary/treasurer for the Southland branch of Autism New Zealand. So life sure is lived at breakneck speed for my family and I! I am very lucky to have the unwavering support of my extended family who are always willing to step into the breech and help where and when needed, as well as the love and strength of David. We’ve been together for 13 years and married for 8 of those this year, and while raising three children -including one who happens to be autistic- so close in age can be pretty tough, we sometimes have to stop and remember our relationship was the rock on which we built our family, so we have to take the time to keep it strong and durable against the battering tide of life and the highs and lows that come with it.

Looking back, I came full circle from being in complete denial to openly embracing the reality of us having an autistic son. It’s something I’ve never hidden and I’m unbelievably proud of the progress Stephen’s made and continues to make each and every day. He receives help from an early intervention teacher, speech language therapist, educational support worker (otherwise known as a teacher aide), paediatrician, occupational therapist, ophthalmologist and resource teacher vision, and has a fantastic teaching team on his side at preschool who strive to provide an inclusive classroom environment for Stephen. He’s treated just like every other child, but with understanding. We love that. We’re now just under a couple of months out from Stephen turning 5 and starting at a mainstream school. We’ve just found out our application for ORS funding for him from the Ministry of Education was successful, and it’s a huge relief to know he’ll have the help and support he requires to make a successful transition from preschool to school. He’s the most wonderful little boy and we’re blessed to have him in our lives.

We shall note for a start that they were both diagnosed at three years of age. Although when we say that Lucia was diagnosed, that isn’t quite correct: she was referred to the specialist services of our District Health Board after an informal assessment by a speech therapist contacted via her kindergarten. The DHB came back with a letter stating that she would be unlikely to be seen for a more formal diagnosis before nine to twelve months, while educational support at kindergarten wouldn’t be provided before six to nine months. And… that was it. We didn’t receive any psychological support or information or any other form of assistance, except in the form of a very small weekly disability allowance – but only after we saw a paediatrician privately. Nobody from the DHB had in fact even told us that the allowance was available.

Now compare this:

Our son Ambrose was admitted to the Accidents and Emergencies Department of Wellington Hospital last Saturday afternoon. Before the acute stage of the illness had even been resolved, the diabetes nurse and the doctors had begun to explain to us the nature of the disease and how it would impact on his life and ours. It was a patient instruction delivered with the utmost sensitivity and care by a well-coordinated team of professionals with clearly defined roles. They all stressed that the ultimate aim was to allow us and later our son to manage his condition and grow to share as much as possible in the same experiences and lifestyle as his peers. (Think about that statement.) By the time Ambrose was discharged, three days after admission, we had seen two diabetes nurses, several doctors, a dietician and a social worker, and had been given a great deal of information not only on how to manage the disease on a day to day basis but also on how to access further publicly-funded support and services. (And, yes, the form to receive a separate disability allowance.) We remain in regular telephone contact with the child diabetes specialist and the diabetes nurse, know what kind of situations are likely to arise and whom to contact if we need information or help.

None of this was the case for Lucia. We were lucky to know advocates and people with autistic children and to have the means to tap into their knowledge. We were even more fortunate to be able to afford some of the help that we needed. But the fact that we could provide shouldn’t be allowed to cover for the fact that we were left to fend for ourselves, and that we (and Lucia) could really have used a great deal more help by a more caring and philosophically robust service.

Now you could opine that diabetes and autism are fundamentally different conditions that require fundamentally different types of intervention. But are they in fact so very different? A diabetic who is denied insulin might die. An autist who is denied specialist psychological and developmental support will fail to thrive. So long as the objective of a fair and equitable public health service is not simply to allow individuals to exist, but also to participate in society as equals, the two services should operate in broadly similar ways: which is to say, by seeking to empower families, schools and communities to care for and include the little boy with diabetes and the little girl with autism. Equally.

And if you still think that no, the two situations aren’t comparable, consider this kicker: one of the services offered to us as parents of a diabetic child by the DHB is a psychologist, in recognition of the impact of the disease on sufferers and their families. It happens to be the same doctor that we’ve been seeing, and who has helped us immeasurably, in the last two years with Lucia – but with her we’ve had to do it privately, since apparently nobody thought that the parents of an autistic child could use something like that.

Justine Fletcher, Giovanni Tiso

http://bat-bean-beam.blogspot.com/2010/09/questions-asked.html

This is not our daughter’s story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it’s not an untypical story. We’re likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We had deferred to their expertise and initiative for too long, waiting to be told. We didn’t know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don’t wait. Don’t labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I’m prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don’t have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It’s only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You’re not going to run out of extra expenses any time soon.

That’s the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here’s where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it’s not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don’t get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister’s doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:

This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 

It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven’t changed a bit.

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:

This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 

What’s ‘meaningful learning’, and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:

The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child’s needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

Autism and guilt